Let’s talk about pain: Exploring patient-centred ways to talk about the science of pain

Pain hurts!  It’s real. You can’t see it, but you know when you feel it.
One in five Canadians experience persistent pain.  Unfortunately, many are recommended sub-optimal, second-line, or even non-recommended treatments.
When it comes to treating pain, large gaps exist between evidence and practice.
Most people, including health care professionals, view pain through an outdated, biomedical lens and focus on treating the tissues.  The contemporary model of pain is the biopsychosocial model (BPS), whereby pain is a product of, and is perpetuated by, our thoughts, emotions, learned experience, social setting, and our biology.  We share examples from everyday life of the BPS model in action in a previous blog post here.
Despite clinical guidelines that recommend treating pain using a biopsychosocial approach, it is still widely underused and misunderstood.  Self-management strategies like education, movement, and cognitive behavioural therapy are among the best first-line treatments that we have for pain.  But, if a person believes their pain is purely structural, they are less likely to be open to non-pharmacological, active management strategies and may have expectations for passive forms of pain management.  The patient may also experience a lack of validation and confusion as to why brain-based treatments are being recommended by their health care professional without explaining how such a treatment might help.  Here is an example of this confusion (and invalidation):
“what are you giving me anti-depressants for?  I’m not depressed, my back hurts – that’s why I’m depressed, and you people are depressing me because you’re not listening.”   (p. 207)
Results from our study: Let’s talk about pain!
We want to change the narrative around pain.  We want to empower patients with the knowledge that pain is influenced by multiple factors and actively targeting these factors can influence a person’s pain experience.   Our studies have explored patient-centred ways to support sharing knowledge about pain with both patients and health care professionals.
We engaged with 21 people living with chronic pain through focus groups and a brief introductory lesson about the BPS model.  Despite having pain for an average of 14 years, only three participants had ever heard about the BPS model from a health care professional.  Participant accuracy on a questionnaire about how pain works was low, reflecting a low understanding of the BPS model, but notably, their scores greatly improved following the study activities.
Through this work, we identified knowledge gaps, barriers and facilitators, key messages, and potential techniques for sharing knowledge about the complexities of pain.  We highlight a need for sharing pain knowledge given that participants described a strong biomedical bias in the care they had received, despite many noting that they were seeking alternatives and felt dismissed.  For example, a participant described:
“[the doctor said] ‘well, there’s nothing we can do.’ And I thought, ‘Can’t you even refer me to a peer support group or something about this issue?’”
Spreading the knowledge is valued, but it’s not easy!
Sharing knowledge that pain is multifactorial and is not an accurate reflection of tissue damage may challenge strongly held beliefs.  Based on what we have learned from people living with pain, here are some things to consider when introducing this concept to someone living with pain:

Empathetic validation is key. Ask and acknowledge how pain impacts many facets of their life.  Every pain experience is unique, and pain is always real.
No one is talking about the BPS model. Most health care professionals are not sharing this information. So don’t assume that someone has already shared information that pain is the product of many factors. Explore their knowledge and understanding about how pain works with curiosity.
Stay current on pain science. HCPs need to update their knowledge to align with the current evidence.  Our participants assumed that health care professionals must not know about the BPS model.  See below for some resources to get started.
Talking about pain is hard. Here are two notable barriers:

Formal diagnoses: People that have received a formal diagnosis may have a harder time making sense of the BPS model. It will be important to emphasize that the BPS model applies to ALL types of pain.
Stigma: The fact that pain is influenced by our thoughts, emotions, learned experience, and social setting can be difficult to hear. The fear of stigma related to mental health presents as a barrier to sharing this knowledge.  Consider framing pain as an interaction between many signals that are interpreted by the brain, rather than oversimplifying to a single pathway (e.g., anxiety, mood).  The focus on brain physiology may reduce stigma and perceived blame.

Storytelling may be the best way “in”. Challenging beliefs is hard and uncomfortable.  We found that personal anecdotes about pain changing depending on context commonly resulted in “Eureka!” moments that provided evidence for the brain’s role in pain.  Finding ways to encourage full descriptions of events leading up to the pain, the transition to chronicity, and how pain changes over time can sometimes prompt an openness to explore the BPS model.

Highlighting the value the BPS model brings to patients
Here are some comments from participants following a brief introduction to the BPS model of pain:

“it gave me hope!” (32-year-old woman; no diagnosis/musculoskeletal pain)
“Gee, there is something I can do beyond what I’ve already done.”  (74-year-old women, osteoarthritis and fibromyalgia)
“I can work on using my brain. That would be great!” (61-year-old man, low back pain)

Patients want to learn about the BPS model, few have ever been told about it, and those that have misunderstand the multifactorial influence on pain, not because of pain.  A brief introduction to how pain works gave participants in our study a sense of hope and agency over their pain. This marks an important first step towards improved quality of life through evidence-based self-management.
Want to learn more about how pain works?  Resources to get you started
Here are a few great websites and videos to get you started: Flippin’ pain, Pain Revolution, Like mind like body Podcast (Curable Health), Tell me about your pain Podcast (Curable Health), along with some evidence-based videos: Understanding pain in less than 5 minutes; Tame the beast.
For more information, contact Cynthia Thomson, Associate Professor, School of Kinesiology at cynthia.thomson@ufv.ca.